Help, experiencing bad care giver burnout

All about caring
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Hello all :hand_with_fingers_splayed:.

Im new here and as the title indicates i am experiencing care giver burnout. I live with my dad who has vascular dementia dianosed April 2025, he previosuly had a vacular parkinsonism diagnosis in 2018. His health is going down badly thus last few months, the change is awful. His mobiltiy has been the worst its been this morning. Sometimes has periods of confusion and being mixed up, cant seem to answer phone anymore etc, bad temper and snappy. He has taken silly risks and falls which as you can imagine has made me amgry that he takes these silly risks.

Anyway, it has become so bad now i cant leave. I get some support from a sibling who diesnt live with me once a week for a few hours so i can get out for shopping etc. Thing is its not enough, amd my mental health is really taking a bad decline because of everything. I feel social services, district nurse have been very little help. There is home help twice a day, but he tends to hold back personal care that they could do and leave it for me to deal with or asks for bed right before the carers are due to come and do it! When i ask him to wait for the carers he simply wont and tomes has started removing clothes in the sitting room!

The Occupational Therapist wouldnt put a stairlift in so we had to do it privately and now im told home helpers cant touch it because it was installed privately! Is that true? He still has capacoty to make decisions etc but bad mobility, surely if its under a warranty guarantee it shoild be ok for carers to use it. Can someone advise me on this please and if possible attach the relevent link proving this.

Also social services havent been that helpful. At original carers assessment back in late March (things are so much worse now!) She talked about “day time opportunities” only to find out recently its through direct payments scheme and because of the dementia it cant be paid to dad so a power of attorney has to be set up.. how i dont know, dads gp wont do a letter to say he still has mental capacity, so social serives talked about doing it another way.. whay annoys me about this is theyve know about the dementia since April and only choose now to tell me!! That was support i was looking forward to. He started day care centre last week and after it, even though it seemed like he had great day he wont go back. He told some people was a good day, and keeps making different excuses for not going, you just know he doesnt want to go and even though his siblings have been telling him to go give me a break he wont!

Its badly effecting my mood getting me down badly. I already have mental health problems and its destroying me. Does anyone know what support i should be getting from social worker?

I went to the office on Wednesday as dads social worker works Wednesday to friday. I told recpetionist i needed to speak with her, that ues refusing day care and its fetting to point i cant handle him anymore. No call back! Im thinking of going into that office on Monday and tell them unless they provide meaningful support or a clear chart to meaningful support by Friday im withdrawing my care. What will likely happen in this event?

Also in last meeting, social workers manager came and told me legally they arent responsible for dad.. but i checked the legislation and im not legally obligated to look after him and as hes vumerable it is their responsibility. The manager also told us eveb though i didnt ask, that they would never allow recordings of appointments, even though i see inactually can request it if im party to the conversation!!

I feel bad doing this. There is other siblings that want nothing to do with it and i feel like im sinking quickly!

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@William01 Welcome to the forum! Sending you a big hug because GEEZ you’re under a lot of pressure.
My Dad had vascular dementia as well as congestive heart failure so I kind of know a little of what you’re going through but parkinsonism is so tough too
It sounds like you said your Dad’s deterioration has gotten a lot worse rapidly…while he may have flashes of coherence that’s a lot of cognitive ability he’s losing now.

It sounds like you’ve done a lot of work trying to get lots sorted for your Dad. It’s not easy, so I just wanted to say well done you!!! There’s so much paperwork and back and forth and to get what you’ve sorted even in place is really good…

While your Dad doesn’t need them right now your local hospice service are usually really good at knowing the local ‘lowdown’ about support agencies/serices: https://www.hospiceuk.org/hospice-care-finder...Perhaps they could help, or suggest a local sitting service to stay with your Dad so you can have a breather

If your Dad is like how mine was, they won’t understand or ‘get it’, and anything not in the home will be scary. My Dad hated things because he was a proud man who didn’t want to appear incapable or invalid…he put on a good show said all the right things, then when the door closed he shouted, argued and the dementia could make him mean and then VERY guilty.

@Charlesh47 or @bowlingbun are more experienced and able to share insights about social workers and responsibilities

you may want to chat with the Carers UK helpline for advice Helpline and other support | Carers UK.

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Just a quick welcome for now, everything seems worse when it’s late and sleep is elusive. The social worker needs “further training”!
I’ll be back later and so will others who have been through similar situations.

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Hi @William01 First off I’ll give the warning that different parts of the UK have different rules, so if you’re in Wales, for example, the rules are different in Scotland, or on some issues, England.

That said, the majority of rules are similar, and one is that the only people with duty of care are the authorities. You do not. You’re absolutely right that you can choose to care, or not to.

Over your Dad’s mental capacity: if he’s already lost capacity, you can’t have power of attorney, because he has to have capacity to grant it. After that the only way is through mental capacity legislation. In England and Wales, it’s the Mental Capacity Act. In Scotland, it’s the Adults with Incapacity Act (Scotland). I don’t have any experience with that, so you might have to do a bit of research. Here’s a starting point: Mental Capacity Explained (Scotland) | Carers Scotland

If you do go to the office to set out a deadline, it’s best to make sure it’s in writing. Lay out the fact that support that was offered has been withdrawn because of the rules and no alternative has been even considered for you, leaving you in a situation you cannot cope with. Set a deadline - and be clear about what you will or won’t do from that point on. And if that is a complete withdrawal of care, make it clear exactly when that starts from. Point out that they have a duty of care, and from that point on they will be guilty of neglect if they don’t take over his care. Incidentally, that duty of care extends to you, too.

Just one thing: your Dad may not have capacity for handling money, but he may well be communicating his wishes, even if he’s being unreasonable about it. He doesn’t want care workers putting him to bed. That could be because there’s a lack of consistency in who the staff member is, and for a person with dementia, consistency is important if they’re going to feel safe. Otherwise it’s just a constant stream of strangers. Trouble is, he seems to have got used to the routine at night in terms of when they are likely to turn up. Same goes for the personal care issues.

The stair lift issue is…difficult. I don’t know of any reason why staff can’t use it. That may be a local policy issue, but I’ve seen nothing in any legislation. Thing is, if he’s having falls, he shouldn’t be using stairs. Do they know about the falls? I’d suggest keeping notes of when he falls, what caused the fall and if he was hurt at all. And sending a report to the social worker every time. The message might get through that way.

Is there a local carers support in your area? If you don’t know…try here: Support where you live | Carers Scotland - they may be able to give you better advice than I can because they know the local conditions.

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William, going forward, what do YOU want to happen going forward?
You cannot be forced to care.
Whatever happens, at some stage dad won’t be able to manage his money any more.
Does he have over ÂŁ23,000?
Do you have Power of Attorney?
Does dad own or rent his home from a council or housing association?
Do you have any brothers or sisters?
I know these seem odd random questions, but the answers will influence where to go from here, because of various rules affecting social care. It’s a bit like Snakes and ladders, you need to avoid the snakes and find the ladders.